NOTES FROM A PANDEMIC May 10-July 5, 2020 on Saturday, July 18, 2020

I have been having a hard time writing since quarantine started over 4 months ago. But, on Mother’s Day I inadvertently started a new mini-blog series that I have been posting on Facebook and Instagram. I figure it would be good to archive here, and share with those of you who are not on social media. Here is the first two months of what I am calling Notes from a Pandemic.

May10

May 10, 2020

Mother’s Day 2020: After dinner my 11.5 year-old asked to sit on my lap. For breakfast Oscar and David made cheddar scallion cornmeal biscuits, served with fresh-squeezed orange juice, an egg, fresh blueberries, and two little vases of flowers from our yard. Before that I lay in bed reading, for a long time, something I have not had much luck doing lately. It was wonderful. There was crying today. And a little bit of yelling. And a video visit with my mom. David hit it out of the park for dinner, too—there was carmelized onion, rosemary, and potato galettes for dinner, with collard greens sautéed in garlic and ginger, and last night’s red lentils. And a blueberry galette for dessert. We all watched the last two episodes of Raising Dion together on the couch in the late morning/early afternoon, and then stayed on the couch. I wrote a tiny bit, another thing I have not had much luck doing lately. I texted a few moms I love. I was not crazy exhausted because I was not up until 1:00 am last night, like I have been the last 4 Mother’s Day Eves, because there was no Listen to Your Mother show last night, and no after party at Nox, our local literary-themed bar. I read emails from a few of the women who took my Writing Motherhood class yesterday, the first class I have taught by Zoom, and the first writing workshop I have taught for adults in a couple of years. It was a gift. This kid, he is my heart. Being a mother is my favorite. I have learned and grown exponentially in the last 11.5 years. I love this kid with my whole heart. The three of us talked for over an hour beyond bedtime in Oscar’s room tonight. A family heart-to-heart. There were more tears. This is hard, these times. And there are so many ways we have it easy. And yet. This is so hard. We get through this together. Together as a family. And all of us together apart. Thanks to Gina Perri Cannady for her post today that reminded me that all us mothers out here, we’re holding each other up. It is reading the little tidbits of your days here on Facebook, or in your blogs, or quarantine memes, or stunning literary essays in high profile magazines that is getting me through. The power of narrative is real. Your words matter. They land somewhere and have an impact. I am grateful for all the mothers out there. And I’m going to try more often to put words together myself, so maybe we all will feel a little less alone as we live this life alone, together.

 

May14

NOTES FROM A PANDEMIC 5/14/20: David and I both agreed tonight that for the most part we don’t mind being home all the time. We like home. We like not having to rush around to places and obligations and responsibilities (granted we have to rush into the next room to log onto the next meeting, etc, but it’s more laid back at home). I got 50 lbs of bread flour in the mail this week (sharing half with a friend). This photo shows the first thing I made with it, a pain de campagne, it was fun to make this fancy shape. I have found comfort and gratitude in putting flour and water and yeast and salt together to make something nourishing and delicious for about the past 15 years, this is not a new pastime for me, but I am grateful to have the time at home to dedicate to it. I decided today that all the money we’re saving by not buying gas, we should be spending on whiskey and rum. It’s another kind of fuel. And I’m not usually that much of a drinker. Oscar has a friend who he has sometimes been eating dinner with—through a screen—it’s awesome. So David and I had dinner together tonight, not a date, but just the two of us in the kitchen, Oscar in his room. I’m trying to practice putting words together because maybe if I practice enough I’ll remember how to do it without having to try really really hard. David has to go back to work in June, which is a thing that has been hanging over this whole quarantine, we knew eventually he’d have to go back. We don’t know yet what it will mean for us. We are researching, and we know there are no real answers, so we’ll have to make decisions based on best guesses. None of us are looking forward to this. As hard, and stressful, and weird as these weeks have been, we are so grateful for this time together as a family.

 

May21

NOTES FROM A PANDEMIC 5/21/20: “Relatively, super ok.” This is what I texted to my dear cousin who is like my little brother several weeks ago when he checked in on us, as we’ve been checking in on each other throughout these times. It was an honest response in the moment, I didn’t think much of it, but it has become his go-to answer of how he and his family are. And indeed it sums up how we as a family are in these times. We are so grateful we have each other, our home, food, jobs, heath care, our health (knock on wood). Some days and some moments are hard, scary, overwhelming, debilitating. Some days and some moments are filled with laughter, gratitude, peace, raucous dance parties, meaningful connection despite isolation. Yesterday we got in the van and took a walk outside of our neighborhood, something we have barely done. The sky was finally blue. We saw only a dozen other people on the path we were on, half of whom were wearing masks. Sometimes we waved and smiled—hopefully it showed in our eyes. Every time, we veered away to the edge of the path. Sometimes the other person did too. What a world right now that this is how we care for each other, show appreciation, to move away from a stranger on a simple walk. Here in the northern reaches the trees are finally starting to burst with chartreuse, and blossoms are opening up. And we continue to be, relatively, super ok.

 

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NOTES FROM A PANDEMIC 5/25/20: My Mom’s birthday. We had a social distance brunch. We cooked, first time we’ve shared food with anyone in 2.5 months. It was a beautiful day to sit outside, soaking up time with my amazing mom. Gifts in the time of COVID—I made her a mask using some special fabric I found among my sewing things in the basement recently. The fabric is from when I was a kid, and she had terrible tendonitis, and was told she had to wear a sling (actually she was told she had to wear two, go figure!). She wanted no part of a boring clinical looking sling, so bought this boldly colored fabric with dancers, we both loved the fabric so much, and somehow I ended up with it and just rediscovered it. AND she presented US with a gift. My mom, who is a master knitter who always has several projects going, and who has been knitting for 65 years, during this pandemic has rekindled her love of cross-stitch. She cross-stitched our family to commemorate this time! What a remarkable woman. Happy Birthday Mom. We love you!!!

 

June2

(photo credit: Oscar)
NOTES FROM A PANDEMIC 6/2/2020: Yesterday we took a break from it all. We are in the midst of a global pandemic, and our country is on fire. We drove out of our city to a tiny little gravel parking lot and walked on this path for a couple hours, where we saw almost no one else. The path meandered mostly through green spaces, and also over this old railroad bridge. And Oscar asked to take our photo, and directed us to take off our masks, and move more into the light. It was so simple and so endearing. Yesterday also marked the last day that David was home, as he had to go back to work today. We have had two and a half months with the three of us being home together 24/7. There is plenty that has not been easy about this time, but what a gift, the time together. Never before have we had that amount of uninterrupted time together, and it’s quite possible that we never will again. For some of our walk we were quiet, and listened. And for some of our walk we talked, about the heavy feeling we are all carrying related to the events of the past week in this country. Over the weekend Oscar asked, “How did racism start in the first place?” And that’s when I decided that this summer he and I should read Stamped: Racism, Antiracism, and You: A Remix of the National Book Award-winning Stamped from the Beginning by Ibram X. Kendi and Jason Reynolds. Apparently a lot of other people had that idea, too, because when I tried to order it, it was on backorder. I’m glad. We can be patient. There are too many thoughts and feelings running through me to even begin to put a sliver of them down into words. We are talking, everyday, as a family. About racism, about the shameful history of our country, about our white privilege, and how we can use it to do better. One thing I know for sure, the three of us will keep learning. We’re committed to it.

 

June14

NOTES FROM A PANDEMIC 6/14/2020: Since David went back to work two weeks ago, Oscar and I have been late to every single Zoom PT session. Balancing Oscar’s most basic needs, plus his appointments, plus a hint of school (we’ve almost completely given up) as it winds down, plus any kind of mother/son connection whatsoever with my very busy work-from-home schedule is super challenging.

Despite the fact that I grew up with two hippie-era parents who have been fighting for racial justice for decades, marching in the streets (getting arrested), calling and writing and showing up to engage politicians, enacting policy change within their own workplaces, and so much more—half of which I may never even know, despite the fact that they have taught me so much about what is right and what is wrong the world, it is really only within the last 5-10 years that I have really been able to start to understand my own white privilege. My own complicit part in racism. And I know I have so much more to learn. And I’m seeing this in my communities—white folk just starting to understand what their privilege means, or not yet being able to see it at all. I am hearing stories of my friends and family having conversations for the first time with their friends and family about racism, about white privilege, about needed change. And I’m so grateful that it seems like the door is being cracked open just a little more, that us white folk are learning just a little bit more collectively, and that’s how change can happen. But just a little isn’t enough. AND IT SHOULDN’T TAKE ANOTHER BLACK MAN BEING MURDERED BY A POLICE OFFICER TO MAKE CHANGE HAPPEN. When will the collective white voice start trusting the collective Black voice? White people have to stop claiming that they know more about Black experience than Black people do. That’s racism.

We were supposed to be at the national SMA conference right now, today would have been the last of the 4 days. We’ve missed it the last 2 years and were so looking forward to going. I miss the community of people, our “mainland” as David calls it and I’ve written about before. We canceled our vacation this summer, too. Knowing we were going to be spending mostly all of our time at home this summer, we decided to get a fire pit and some new chairs for our yard. I am so grateful. Just two fires in, I can see how good this is going to be on so many levels. The quiet of sitting outside under the night sky, flames licking at the wind, the wood crackling, the smell in the air. There is something so simple and so almost primeval about sitting around a fire. It brought me a deep sense of peace. A quieting of the mind that is always buzzing these days—with the news, with work, with parenting—all simultaneously. And at our second fire, one of Oscar’s closest friends who lives around the corner joined us (with mask and at a safe distance) and we talked and talked, the four of us, mostly about Radiohead and police brutality, but a little about online school and silly things that made us all laugh, too. It was pure joy to welcome him into the fold—I miss Oscar’s friends as much as I miss my own, and this can be a way we can gather.

Gather. Gather community. Gather against injustice. Gather thoughts and feelings. Gather quiet. Gather laughter. Gather words on a paper or screen. Gather love. Let’s gather, ok?

 

June15

NOTES FROM A PANDEMIC 6/15/20: I had my first in-person work meeting in three months! My two incredible SummerWrite coordinators came and sat in my front yard so we could work on planning our staff training (which will take place on Zoom). What joy!

 

June23

NOTES FROM A PANDEMIC 6/23/20: Today I set foot in a building that is not my own home for the first time in three months, in order to exercise my right to vote. I applied for an absentee ballot, but it never arrived. So I did what I had to do.

 

July3

NOTES FROM A PANDEMIC 7/3/2020: I don’t take photos of the meltdowns. I take photos of the melting ice cream we eat after we move past them. I remember when I was a kid my mom said people asked her why all the photos of me were smiling, why didn’t she have any photos of me crying, and her reply was that when I was crying she was engaging with me, comforting me, finding out what was going on, and parenting me. Without ever having been asked that question myself, I realize I am the same way. When we’re in the mess together, we’re in the mess together, not documenting it. This is a photo from earlier this week, not too long after we both had a meltdown. A version of a meltdown one or both of us has at least once or twice a week because working and parenting simultaneously is hard, being 11 and needing to rely on someone else for a bunch of your physical needs (that someone else who during the day is only your mom who is working, and her own physical strength is not keeping up great with your growing body) is hard. If you haven’t, please read Deb Perelman’s (of Smitten Kitchen!) piece in the New York Times from yesterday, “In the Covid-19 Economy You Can Have a Kid or a Job. You Can’t Have Both.” And the thing is, my boss is AMAZING. She gets it. She’s super flexible and accommodating. And so do my two summer coordinators. Amazing humans. And David is THE BEST. He gets it more than any dad I know. And it’s still hard. And it will be. And that’s simply the world we are living in right now in a global pandemic. And we are the lucky ones. I’ve said it before, I’ll say it again. We have jobs. We have health insurance. We have our health (knock on wood). We have food and shelter. A really nice shelter, in fact, that I still don’t mind being “stuck” in. And we have each other. It’s only been 3.5 months. And Covid is going no where, the numbers are making that clear. And we’re not going anywhere either. We’ll stay home and take every precaution we have to for as long as it takes. Oscar and I like to say that ice cream runs in the Bonn blood, and there are several others in the extended Bonn family that would agree with us. And we’re ice cream snobs. The homemade ice cream at Pittsford Dairy is our favorite. Oscar and I can often be found there once a week (or more) during the summer. So all along my dad has been getting us containers of Pittsford Dairy Ice Cream, curbside, and this week we ordered cones in our grocery order and we made our own at-home Dairy experience. It was the perfect antidote to a meltdown, and we’ll be doing this regularly. The little things. Whatever it takes to stay sane. To stay safe. To try to keep the world around us safe.

 

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NOTES FROM A PANDEMIC 7/5/2020: 168 years ago today, just a few miles from our home, Frederick Douglass gave one of his most significant speeches, “What to a Slave is the Fourth of July?” Here is one small excerpt from this speech, “I am not included within the pale of this glorious anniversary! Your high independence only reveals the immeasurable distance between us. The blessings in which you, this day, rejoice, are not enjoyed in common. The rich inheritance of justice, liberty, prosperity and independence, bequeathed by your fathers, is shared by you, not by me. The sunlight that brought light and healing to you, has brought stripes and death to me. This Fourth [of] July is yours, not mine.”

So, yesterday we went to visit Frederick Douglass’s gravesite at Mt Hope Cemetery. We came home and watched a video (available on NPR) of a group of young people, all descendants of Frederick Douglass, reciting this speech. This morning I sit reading Dr. Krystal M. Fleming’s brilliant words in her book, “How to Be Less Stupid About Race,” and I am learning more all the time. Did you know that in the US, on average, white families have 10 to 13 times the wealth of black and hispanic families? And in Washington DC white families are 81 times wealthier than black families? I knew there was a serous gap, but I didn’t know it looked like that. For our family, the Fourth of July is no longer a national holiday to be celebrated—though I’m not sure we ever really looked at it that way. It is a day to be extra-conscious in our learning, in our anti-racism.

The fourth of July does hold a different kind of special place of celebration in our family, though. David and I like to say that is the day, 26 years ago, the fireworks went off for us. I’m filled with gratitude for this human I share this life with. This person who asks questions, and listens. This person who supports me in my creativity and intellect. This person who is so creative himself, and smarter and wiser than he’ll ever give himself credit for. This person who is so deeply dedicated to the well-being of our family. This person who is the best parenting partner I could ever imagine. This person who endlessly brings music, literally and figuratively, into my life and our home.

Pandemic Blog Post Attempt #387 on Thursday, April 9, 2020

Pandemic Blog Post Attempt #387

First week in quarantine.

First week in quarantine.

Ok, 387 might be a bit of an exaggeration. However, I’ve started a blog post in my head at least a few dozen times, and on paper there have been no fewer than 4 attempts.

I am having a hard time writing. Writing is where I go for self-care, stability, creativity, making sense of the world, digging deep, telling stories that have a beginning, middle, and end. Hmm. Right. Not a lot of room in my brain for those right now. All the information coming in is such a clutter these days.

We’re home, all three of us, all the time, and we have been for nearly four weeks now. We are healthy. We have food, shelter, jobs, each other. We’re ok.

David works for the University of Rochester Medical Center. In his current position he is nonessential staff and has been able to work from home. On April 13 he switches departments (this was all planned before the pandemic and is a good move back to a department where he used to work, into a new position). Once the switch happens, he becomes essential staff. So, I spent the first two weeks experiencing intense stress at the possibility of him returning to work, visions of him quarantining in the basement, and possibly contracting COVID, and me single parenting indefinitely (and quite possibly injuring myself from going solo on Oscar’s physical care), in order to protect Oscar. Last week, after many phone calls and tons of paperwork, we got word that David can go out on paid family leave starting next week. That has relieved so much of my stress. And Oscar’s. And David’s too, though David was doing a great job of staying in the present moment and not getting too far ahead of himself.

Ok, that’s the best I can do with paragraphs these days. Here are some snapshot moments, musings, thoughts, feelings from our COVID-19 lockdown:

I used to look forward to getting the mail every day. Now it is one of the more dangerous parts of the day.

For the first time in the nine years we have lived in our house, I am grateful we don’t have sidewalks in our neighborhood, it makes it easier to avoid people while out walking.

Not being around anyone else besides his parents, 24/7, is really challenging for our extroverted tween.

Being around two other people 24/7 with no break is really challenging for this introvert. But if I had to be quarantined with anybody, these are the two I’d pick.

“Homeschooling” our very socially engaged learner while trying to work from home is overwhelming. Oscar’s teachers have been great, like really great, I can’t believe how quickly and seamlessly they transitioned work to a digital platform, but fitting a full week of school work in at home each week, yeah that’s not happening.

It’s really scary having a kid with a compromised respiratory system during this pandemic.

I keep saying that my goal for us every day is to get outside for a walk, and to video chat with at least one person (especially for Oscar) that we care about. Anything that happens beyond that is a bonus.

The apex in our community might not come for many weeks. If that’s true, then everyone who will be sick then, hasn’t been exposed yet. That means our actions right now really matter.

Our last grocery shop (Instacart, we tip big, wait as long as possible in between shops, and leave thank you notes for the folks delivering) took me about seven hours. We ordered for my dad, too, so he could pick up his groceries from our garage, rather than have to negotiate his single order being delivered to the apartment complex he lives in. The ordering online was spread over the course of four hours because I was helping Oscar with school work at the same time. Then, day of the delivery, I spent most of the morning finally setting up a proper staging area in our garage—a table with a “clean” side and a “dirty” side, I wiped the whole area down, set up wipes and hand sanitizer and bins for produce. So when the groceries arrived I could sort, separate, and disinfect each item before it came into the house. Then I stripped and showered. These are the precautions we’re taking.

 

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We started a family isolation journal on our first day all home together. We’ve each been writing in it a few times a week, as a record of these times, and as a way to process some of our feelings.

We are so grateful to not have to get up at 5:30 every morning. We’re still keeping somewhat of a schedule, getting up 7ish on weekdays, getting dressed and ready for the day.

There is more yelling, crying, and cussing, from all three of us, than usual.

The first two weeks, almost every day around 10am, David came into the kitchen where Oscar and I were usually attempting school work, and asked, “Who brought the donuts to the breakroom?” So the last two Tuesdays I made cinnamon blueberry coffee cake/bread. Yum.

My sister, brother-in-law, and 21-year-old nephew are all essential services. Nurse manager/HR & safety manager for environmental clean-up/Wegmans. They are working looonnng stressful days, running errands for people like us who can’t risk leaving the house, continuing to work on the weekends, and my sister, who is also a gifted seamstress, is making masks for her staff on the weekends.

The incredible privilege we have to be able to stay home is not lost on us. Sometimes I feel like I am not doing my part to help the community because I am staying home and taking care of my family, and not much else. Yet staying home is one of the very best things we can do for our community.

I know that I feel better when I avoid large doses of social media and news media. I want to stay informed and connected in a healthy way. Yet nearly every day I find myself consuming a large quantity of media.

 

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On the third day of quarantine I cut about 7 inches off Oscar’s hair, at his request (well, I don’t think he requested quite that much, nor did I realize in the moment quite how much I was cutting, but in the end everyone was happy).

The people I work with are like my second family, and I miss them. I have gotten a little choked up during or after each of our weekly Zoom staff meetings.

Oscar usually does aqua therapy twice a week, and PT at school twice a week, too. We have no idea when he will be able to get back in a pool again. Or work in person with any of his physical therapists. However, he is now doing Zoom PT, twice a week with this aqua therapist, and once a week with his school therapist. And it works! He’s getting a great work out.

Yesterday morning my brother-in-law dropped a few items from Wegmans off to us, at 7:00am, on his way into work. We stood on opposite sides of our glass front door and greeted each other. It was so good to see his face. I welled up as he walked back to his car and drove away. 

Love wins the day. David keeps saying this. It’s becoming a bit of a family motto. And it’s so true. Even when I write intense posts on FaceBook that include the directive STAY HOME in all capital letters, and maybe even use the F-word. Because as much as everything we do right now is all tangled up with grief, staying home, for those who have the privilege to do so, is one of the most pure acts of love anyone can perform right now.

And still I have a hard time posting this. Some of this feels so petty, so mundane, when so many people around the world are sick, dying, so many people are on the front lines, risking their own lives for others. When so many have lost their jobs, are facing discrimination, are working low wage jobs to provide food, or—as my mom keeps reminding us—clean the hospitals where COVID is running rampant. 

But we all have a story in this. All over the world. No matter what it looks like for each individual. We are all in this together.

2019, a quick look back on Wednesday, December 18, 2019

 

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One of the highlights of 2019 was Oscar as the featured guest on Connections with Evan Dawson, an hour-long radio program on our local NPR affiliate, WXXI 1370AM. Oscar spoke about disability rights and awareness, and did us proud, to say the least. (David and I appear on the show as well, along with Oscar’s school counselor). Here’s a quick one-minute spot from the show:

 

And here is the link to the full hour-long show:

https://www.wxxinews.org/post/connections-oscar-merulla-bonn-disability-rights

This came about because last spring Oscar’s fifth grade teacher invited him to give a presentation to his class on disability rights for Human Rights Day. Once he moved to the middle school in the fall, he requested to give this presentation to the faculty at the middle school. The Connections producer caught wind of the presentation and invited Oscar on the show!

 

This fall Oscar was the Ring Dude in Briana & Brad’s wedding. Briana was Oscar’s very first MDA camp counselor when he was six and seven! What special people, what an incredible event!

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Oscar has taken his drawing to a whole new level this year, these are a few in the recent series of demons he has created:

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David had quite the year. He injured his knee in March and had ACL reconstruction surgery at the end of May. For a guy who had been running 6 days a week, and doing the lion’s share of the physical work of taking care of Oscar, this was no small ordeal. We are deeply grateful for the folks who fed us and helped us out with Oscar! David was cleared to run in October and completed PT in November. He worked so hard to get there!

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And I did a lot of reading this year (this is just a small sample) and I also gave a reading, for the first time in a long time, with my friend and one of my favorite Rochester writers and artists, Reenah Golden.

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We participated in the Rochester east-west anti-racism walk with our friend Ken, who is the great, great, great grandson of Frederick Douglass.

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And we took Oscar on an overnight trip to see one of his favorite bands…

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We had a much needed and deeply relaxing/rejuvenating week at the ocean (Rhode Island) where we ran into dear friends and neighbors who we ended up spending much joyous beach time with!

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And we had the great fortune this year of seeing many friends and family from far away, many of whom we had not seen in quite some time!

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David with my two favorite cousins at the Mark Bradford show at the Baltimore Museum of Art

 

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Oscar with friend and author of Good Talk, Mira Jacob. (If you haven’t read her book, you must!!! All three of us appreciated it deeply, one of the best books of 2019 for sure!!!)

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Oscar & Lila (at the Memorial Art Gallery) have known each other since they were in utero

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We became great friends with this family when Oscar and Graham were in preschool together! We caught up with them in RI!

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We had too much fun with these guys to remember to take a photo until it was dark. We’ve been friends with Sarah nearly 20 years, but we live thousands of miles away from one another…

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And what joy to see this Sarah, who Sally went to college with, and her kiddos.

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And another fabulous fall visit from Noppa and Merrill Bittner!

 

We are grateful for ALL our family and friends, near and far, and for many good times spent.

xxoo,

S, D, O

SMA Awareness Month on Saturday, August 31, 2019

August is SMA Awareness month. Throughout the month I posted four mini-blog posts on Facebook, and thought it was worth gathering them together, here, for anyone who didn’t get to see them all. It’s a tiny peek into our world of disability. Additionally, there is a bonus link at the end, I highly recommend you take a look! Here are the four off-the-cuff posts with the original photos I posted them with…

August 2

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August is SMA Awareness Month. I know some amazing people in the SMA community who are planning to post every day, or several times throughout the month, different facts and info regarding SMA, disability awareness, etc. I’d love to believe I will, but the truth is I’m sleep deprived, and I never know what I’ll have the time/brain power/inclination to actually do. I could say that SMA has been part of our lives for 9.5 years because that’s how long ago Oscar was diagnosed, and that’s when we first heard of it. However, it’s always been a part of our lives because David and I were each born as carriers of SMA, and never knew it. About 1 in 40 people are carriers, in fact. I am so much a better person for the presence of SMA in my life, much of that is owed, of course, to the bright light our Oscar is. I have learned so much about accessibility, about acceptance, about inclusion, about creativity, about advocacy because of SMA. I have met remarkable humans: kids, parents, PTs, physicians, NPs, RNs, PAs and so many more. I have learned that walking is definitely not the most important thing I can do and that one can have a completely fulfilling and joy-filled life and never walk. I have learned how to step out of my comfort zone and ask for help. I have learned how to step out of my comfort zone to tell complete strangers they are out of line in parking in the yellow lines or in the accessible parking “for just 5 minutes.” I have learned that doctors and administrators are just people too, and at times I know more than they do. I have learned when to listen to them, and when to question them, and when to be silent and do the opposite of what they suggest. I have learned to pick what really matters to me in life and stick with it. And to forgive myself when I am too tired to stick with it. I have learned that my kid knows more than I do about living with disability, and sometimes I have to back pedal and say “I’m sorry, you are right.” I’m looking for that last sentence to neatly wrap up this little post, but every day I am learning more, there is no end to learning, to experiencing, so there is no real end to this post either. Thanks for reading. xo

 

August 8

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More about SMA awareness month. Things we have to think about every time we leave the house, especially going to new places: Will there be VAN accessible parking? Is there any accessible parking at all? Are all the spots already taken? Where are the curb cuts? Are there even curb cuts? Will there be muddy/gravelly/uneven or otherwise challenging or inaccessible terrain? Is the entrance to where we are going accessible? Do we need to bring one or more of our portable ramps (we‘re SO lucky to have them, nonetheless they are heavy and awkward to wield)? If we can get inside is the whole place accessible? Are there additional interior steps? Are things placed at a reasonable distance to allow a wheelchair easy access through? Will it be super crowded (it’s very challenging to move through a crowded space in a wheelchair)? How much extra time do we need to allow for strapping Oscar in with his 5 buckles he can’t do himself to secure him in our van? How much extra time do we need to allow for a slow lift or a busy elevator? Do we need to cover Oscar’s joystick because of rain or snow? Has snow been adequately cleared for a wheelchair? Is there an accessible bathroom? If the bathroom is labeled accessible, and even if it is ADA approved, is it actually accessible? (Many ADA approved stalls are too small, or have doors that open inward, making it impossible to close the stall door once a power wheelchair is inside the stall). Is the bathroom gender neutral? (When Oscar and I go out together, alone, this is key, he is not ok with going into a women’s room!). And probably a dozen or more other things that are so second-nature to our thinking that I can’t even identify—just to leave the house, people.

 

August 21

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SMA Awareness month post: People say things to people in wheelchairs that they don’t say to people who don’t use wheelchairs. It can be weird. Watch out you might get this face, if you do! Oscar, David, and I are working on coming up with some come-backs that will hopefully make people more aware, and hopefully not come off as rude, but honestly, this kid hears so many weird things (and the same ones again and again) it’s hard, sometimes, to address some of these and not sound rude. Some examples: We were in a parking lot recently (in the rain) and Oscar was zooming into the van. A passerby said, “Wow, look how fast!” (wouldn’t you be running in the rain?!) and then (and this is one he gets ALL THE TIME), “You really know how to maneuver that well!” I replied, “Yep, just as well as you and I can walk.” She laughed a slightly uncomfortable laugh. I get that someone unfamiliar with people in wheelchairs wants to relate in some way, and this seems to be an easy go-to. But would you ever say to an ambulatory ten-year-old, “Wow, you’re really good at walking!”???? He/we also often get, “I’ll pray for you!” Oscar’s comeback for that is, “Yes, please pray that I don’t get a lot of homework.” People in wheelchairs don’t need more prayers than people who walk. Life in a wheelchair is not unfortunate. Honestly I’d like to say to people who say that, “And I’ll pray that you learn not to ‘other’ people.” People also like to ask if Oscar has a license or tell him he’s going to get a speeding ticket. That was a little bit cute at age four. Not so much at age ten. Oscar has been in situations where adults in charge have said, “Slow that thing down!” or “Park that sucker!” The chair is part of him. It is dehumanizing to refer to it as separate from him, as he is the one in control. Would you ever say, “Slow those legs down!” to a kid who is running? Strangers often also like to refer to Oscar’s chair as a “car,” “cart,” “buggy,” etc. Perhaps there is some fear of naming what is. A child in a wheelchair. Guess what? He knows it is a wheelchair. He has known since he got his first wheelchair at the age of 19 months. It’s not scary, it’s the truth. And he LOVES his chair. The day he got his first power chair at the age of 3 remains one of the happiest days of my life, because he finally had the independence that other kids his age had had for some time. We’re loud and proud here in this family. People with disabilities are people. Talk to them like you to talk to any human.

 

August 31

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SMA Awareness Month Post: Disability Pride. Yes PRIDE!!! Approximately 20% of the US population have a disability, and nearly one billion people worldwide have disabilities. A disability is just one of the many ways each human is unique from another. Oscar is so proud of who he is, as are so many people with disabilities. He doesn’t wish he was any different than he is. Oscar does not wish he could walk, he never has, in fact. Oscar’s disability is a part of who he is, it cannot be separated from him. Oscar says, “You shouldn’t feel sorry for me because I’m disabled. It’s who I am, it’s part of me…I’m just a kid like any other kid.” This concept is foreign to many. It was somewhat foreign to me before disability became a part of my everyday. Architecturally the world is not made for people in wheelchairs, and that is its own giant hurdle. When you notice a business with no accessible entrance, or no accessible bathroom, or shelves too tight together to easily fit a wheelchair, say something! But please also say something when you hear people using a different tone of voice with disabled folks, when you see people treating those with disabilities differently simply because they are disabled. In order to spread this message of pride, we need an army of accomplices. It’s exhausting day in and day out, especially for Oscar, to have to explain himself, to have to listen to the strange things other people say to him. Anyone who belongs to a group that is marginalized by society knows this. Because of my relationship with Oscar my mind and my heart are expanding. I am learning to further grow my empathy, I am learning to look around me more, to place deep trust in the voices of those speaking from marginalized communities. Join us in our pride. Not pride that Oscar is so cool *in spite* of his disability. It is not something to *overcome*. It is not something to *fight against*. It is not an IT. Disability is an important part of who Oscar is.

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And finally,

I’d like to share with you the instagram account of a dear friend of ours who we know from the SMA community. She spent the month of August posting on Instagram in honor of SMA Awareness Month, and her posts were informative, moving, thoughtful, hysterical—all of it—capturing moments of the disability experience in a raw and beautiful way. You’ll see some of our sentiments mirror one another, and she also offers different layers, details, perspectives, especially as an adult who uses a wheelchair. Her posts moved me to no end. Check them out:

https://www.instagram.com/letsdothisheather/

We first met Heather when Oscar was three!

Oscar and Heather become fast pals at the conference. Seen here making the diver "OK" sign together!

Oscar and Heather become fast pals at the conference. Seen here making the diver “OK” sign together!

 

Happy SMA Awareness Month! Thanks for reading!!!

xxxooo

Sally, David, & Oscar

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